There are many analogies Sandy Gale uses to describe her affliction: It's as if she is separated from others by an invisible barrier, as though her "self" doesn't completely fill out her skin, or that she is like a Xerox of a Xerox of a Xerox. But none of them, she says, really captures how she feels. "Nobody really gets it," she says, sighing. "Nobody."
Gale is sitting in the lobby of the Washington Hilton on Connecticut Avenue, where a convention of the National Alliance on Mental Illness (NAMI) is under way. Attendees include doctors, health care administrators, and concerned relatives, but Gale is, as NAMI euphemistically puts it, a consumer; i.e., a mental patient—"a science experiment," she says. Although back home in Ypsilanti, Michigan, she considers it a success if she can make it from her apartment to her local Panera's for coffee and a danish, Gale left her comfort zone to fly to DC because she needs to do some reconnaissance for a workshop she's planning for next year's NAMI convention. Unfortunately, the syndrome she's desperate to publicize makes normal functioning a challenge. "If I feel in the middle of this interview that I have to go back to my room, I will," she says, somewhat bashfully. "I gave myself a ton of time to get ready to meet you this morning," she continues, and the casualness of her clothes—khaki clam diggers and a pink hoodie—suggests that it wasn't her outfit that took so long to put together.
A typical day for Gale: She rises around 9:30 A.M., never terribly eager to get out of bed. "I won't go out without taking a shower, because I don't want to smell or have greasy hair, but taking a shower makes you very conscious of your body"—or in her case, the fact that she feels detached from her body—"so it takes me about half an hour just to convince myself to get in there." By 11 A.M., she retrieves aforementioned breakfast, and then, if she's feeling up to it, she'll do an errand before heading back home for a long afternoon nap. "Everyone says, 'Get outside!' But outside everything is infinite, and it gets you thinking about who you are and what's beyond. Then that preoccupation starts to hang over you. I feel better between four walls."
Despite having a master's degree in film that once got her a production job at 20th Century Fox, Gale, now 48, hasn't worked in more than 10 years. Most of her energy goes towards managing her feelings of alienation and avoiding anything that might trigger an all-out attack, where she feels so disconnected from her flesh and bone that she can barely move. "The woman who lived beneath me invited me over, but I'd been avoiding it because I didn't want to sit and talk. Finally, I went down and our apartments' layouts were identical, and whap, the disorientation of the duplicate apartment triggered an episode. I had to figure out how to fake my way through drinking a cup of tea when I couldn't feel a thing."
Gale might just sound like she is depressed, prone to anxiety attacks, and tends to dwell on the existential more than is good for her. While this all may be true, her inability to maintain a solid sense of herself—a perversion of the Buddhist's egolessness, perhaps—has been given a name by the mental health profession: depersonalization disorder. It first appeared in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1968 under the name depersonalization neurosis, where it was described as a "feeling of unreality and of estrangement from the self, body, or surroundings." Until recently, hardly anyone had ever heard of if, but to the extent that mental illnesses come in and out of fashion—ADD, anyone?—it has of late been attracting much more attention. Depersonalization websites and support groups are proliferating on the Internet, and two research units dedicated to the study of the condition have opened in the past decade—one in New York, the other in London. There's even a movie about it called Numb, starring Matthew Perry as a screenwriter suffering from the disorder, written by, you guessed it, a screenwriter suffering from the disorder. "My hope is that the movie will blow depersonalization wide open, and people will come out of the woodwork and say, 'I've got this thing,'" says Harris Goldberg, whose movie premieres this month at the Tribeca Film Festival. "It taps into what so many people are going through now, people in their thirties and forties who are feeling anxious."
Jeff Abugel, the founder of depersonalization.info and coauthor with clinical researcher Daphne Simeon, MD, of Feeling Unreal: Depersonalization Disorder and the Loss of Self, elaborates: "There is something very depersonalizing about society today. You can go on the Internet and be whoever you want to be." Some observers speculate that our endless choices of entertainment outlets eat away at the grounded self. "There are people walking around with MP3 players or cell phones, being absorbed in the vivid fantasy world of television and video games in a way that causes someone's immediate surroundings to drop away, and disappear," says Steven N. Gold, PhD, a professor at Nova Southeastern University Center for Psychological Studies in Fort Lauderdale. "Also, modern society exposes us to so many situations that demand different ways of presenting ourselves—we act one way with family, another with friends, another at work—that it makes it hard to figure out who we really are."
Cultural explanations like this can sound pat, as if with a few tweaks they could be blamed for just about any mental disturbance. But we all know what it feels like to be blurred at the edges every once in a while, when severely jet-lagged, for example. We can even induce the state—staring at oneself long enough in the mirror usually does the trick. The experience is analogous to the perceptual shift of déjà vu, although those with the full-blown disorder never completely return to normal. "It may very well be that there's a huge population of people suffering from depersonalization disorder out there," says William Narrow, associate director of research at the American Psychiatric Association. "It's a matter of getting more research to show how prevalent it is and its burden to society. Those things get the attention of policy makers and drug companies." Complicating matters, depersonalization also crops up frequently as a symptom of common mental illnesses such as depression and anxiety. "When you have a symptom that's really widespread, our task is to decide, Where does it become its own disorder?" Narrow says. It might seem like semantic quibbling, but the debate matters. Insurers only pay to treat defined disorders—provided, of course, that doctors are able to actually recognize them.
Enter Daphne Simeon, who is depersonalization's most prolific researcher and enthusiastic promoter. "A couple of decades ago, obsessive-compulsive disorder and body dysmorphic disorder were considered these rare things," says Simeon, a petite 48-year-old with wavy brown hair and a vaguely European accent that turns out to be Greek. "They'd always been around, but people weren't widely aware of them, because very few experts were studying them."
In the fourth edition of the DSM, the mental health profession's bible of illnesses, depersonalization is grouped with dissociative disorders, an eclectic category that's still trying to recover from the multiple-personality-disorder scandal of the late 1980s and early 1990s (wherein a rash of cases were found to be iatrogenic, meaning they were induced by doctors who, intentionally or not, pressured vulnerable patients into manufacturing "alters" and recovering false memories of childhood sex abuse). Lately, the growth of dissociation has been reinvigorated by the huge growth of post-traumatic stress disorder, which, although it's an anxiety disorder, has made it acceptable to look at dissociative experiences again—so much so that the International Society for the Study of Dissociation, whose annual meeting Simeon is attending in Los Angeles when I catch up with her, has decided to add "trauma" to its name. "The hope is that we'll draw more people and get a larger audience," says Gregg Robinson, the executive director of the newly named group, ISSTD.
The association tapped Simeon to co-chair a task force to raise the profile of all the dissociative disorders in the next edition of the DSM, due in 2011. And the depersonalization PowerPoint presentation she gives to the committee is a big hit—her main thrust being that the disorder will go nowhere until the DSM definition expands so doctors can diagnose it accurately—but elsewhere, it hasn't been easy to nurture her pet subject out of obscurity. [Editor href='https://www.psychologytoday.com/blog/the-search-self/201406/depersonalization-in-the-dsm-5' target='_blank">the 2011 DSM renamed depersonalization disorder, or DD, to depersonalization/derealization disorder, or DDD, and narrowed the spectrum of what it means, removing presentations related to medications or preexisting medical conditions.']
After completing medical school at Columbia University in 1987, Simeon stumbled upon disassociation as a research fellow studying severe character disorders. Many "cutters" injured themselves because they felt depersonalized, she realized: inflicting pain was their way of feeling more real. The state was fascinating, she says, and as a bonus: "It turned out to be a wonderful area to explore and really build a niche for myself."
She began by trolling for sufferers via newspaper ads: "Do you frequently feel UNREAL or DETACHED from yourself/your body/the world, or as if in a dream/fog?" Subjects began to trickle in. "It is as if the real me is taken out and put on a shelf or stored somewhere inside of me," said one, a 43-year-old clerical office worker. "[It is] like I am a spectator of my own movements,"said a 36-year-old actor. Simeon ran her subjects through a battery of tests, asking questions such as, "Have you ever felt as if you were standing next to yourself or watched yourself like looking at someone else or in a movie?" She tossed out the people who didn't meet her criteria, which she cobbled together from various sources, and those who remained formed her core impression of depersonalization. "There was a lot of consistency, and that confirmed that this really was a distinct disorder," Simeon recalls.
By analyzing her growing database, which now contains several hundred patients, Simeon noted some commonalities among sufferers. They tended to get sick in young adulthood; had an emotionally abusive or mentally ill parent; and often suffer from other mental illnesses, such as anxiety and depression. Simeon interprets the disorder as a defense mechanism against stress, a way of separating from painful or conflicting impulses and feelings. "It can be sudden stress, prolonged stress, the stress of another mental illness, traditional life stress, and it can be early childhood stress or abuse," Simeon says. In other words, just about any kind of stress can do it.
As Simeon published her findings, she started getting invited to hospitals to educate other practitioners. In her book, she suggests that depersonalization disorder may affect as much as one percent to 2 percent of the population. With her reputation now staked on depersonalization, it's not surprising that Simeon sees a hidden epidemic of it in our midst, but even some of her supporters don't share her belief that the disorder is widespread. "It's rare," says James Chu, MD, chief of hospital clinical services at McLean Hospital in Belmont, Massachusetts, who asked Simeon to speak at the famous psychiatric facility last year. "Even a specialist like me will only see a couple of cases a year, max."
Chu's colleague at McLean, psychiatry professor Harrison G. Pope, MD, is more skeptical still, but for the opposite reason: "If I were betting, I'd say it's likely a nonspecific symptom, rather than a disorder unto itself. I'm saying that because in the course of my clinical practice I see it every day."
Simeon's estimate is based on the studies that she admits, in person, are inadequate. "We've been wanting to do a big epidemiological study, but it's a big deal to put one together."
Among those who do believe that depersonalization rises to the level of a full-fledged disorder, there is more disagreement—about the diagnostic family to which it belongs. "There are valid arguments in favor of seeing it as an anxiety disorder," says Mauricio Sierra Siegert, a clinical researcher at the Depersonalization Research Unit at the Institute of Psychiatry in London. "Ninety percent of the patients I see are anxious individuals."
And yet another interpretation: "I think depersonalization disorder is a form of obsessive-compulsive disorder, except instead of the focus being on cleanliness or hoarding, it's on the self," says Evan Torch, an Atlanta psychiatrist. "Once the patient notices depersonalization, they get obsessed and keep looking for it; it's like, once they notice that they don't feel whole, it's very hard for them to feel whole again." Gale, for one, says that by thinking about her symptoms, she can bring them on. "It's an over-consciousness of the self that will kick it off."
Simeon regularly returns to the increasing number of peoplesuffering the same constellation of symptoms as proof that depersonalization is a discrete entity, but this kind of reasoning has its limits. In Hystories: Hysterical Epidemics and Modern Media, cultural critic and former Princeton professor Elaine Showalter argues, for example, that advertising for patients, as Simeon did, attracts a suggestible population that is looking for an organic explanation for their personal problems. In Showalter's view, recent trendy disorders such as chronic fatigue syndrome and Gulf War syndrome gained traction because they tapped into deep seated human narratives of victimization, which the media both reflects and propagates in an endless feedback loop.
But even if depersonalization has become faddish, that doesn't mean it's not real, says prominent psychiatrist Peter D. Kramer, author of Listening to Prozac. "Though I don't fully believe them, studies show depression to be on the rise, by perhaps 5 percent in 10 years, independent of changes in ascertainment. So why not depersonalization? For many diseases, we don't know why they wax and wane. Changes in diagnoses rates are common and do not in themselves indicate that a category is suspect.
Perhaps the biggest hindrance to Simeon's quest is that she has not been able to pinpoint a cure—and not for lack of trying. Various SSRIs, naltrexone, and the anticonvulsant Lamictal have to date been unsuccessful in treatment trials, though along with psychotherapy, they may help in some individual cases. "We need a drug," says Simeon bluntly, ever aware that deep-pocketed pharmaceutical companies have more to do with promulgating new disorders these days than almost anything else.
"I've tried everything. I'd drink turpentine if I thought it would help me," Gale says. For as reassuring as it's been to discover others like herself on the Internet, without relief of her symptoms, that comfort seems to be wearing off. Equally fragile is the sense of purpose she'd initially found in identifying and embracing her disorder. When I first met Gale at the NAMI conference, she was enthusiastic about being a depersonalization poster child, willing to trot herself out for journalists and explain, over and over again, what the disorder is like and delve into her traumatic childhood with her narcissistic mother and absentee father. Several months later, I checked in with her and she emailed me, "I'll be honest, I'm ready to give up on the NAMI thing. I'm tired of being ill. Really am." It reminded me of something that she had said in the lobby of the Hilton in a brief moment of despondency: "One day, I hope I forget all about this and don't care anymore."
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